“Our study demonstrates the high sensitivity of [gallium Ga-68 dotatate] in the localization of [ectopic Cushing’s syndrome], for both occult primary tumors and metastatic lesions,” the researchers wrote. “Importantly, the use of [gallium Ga-68 dotatate] impacted clinical management in 64% of patients with [ectopic Cushing’s syndrome] overall.” The researche […]

The 11th annual Pituitary Day will take place on October 19, 2019 Patients living with pituitary disorders can hear lectures from our pituitary specialists, see movies of pituitary surgeries and hear from other patients about their experience living with pituitary disease and undergoing surgery.

Cynthia is from Ruckersville, VA. She is testing for Cushing's due to many symptoms. tested for CD because after exhaustive research on AVN (Avascular Necrosis) related to other diseases. I have four known areas of AVN & after seeing the symptoms of CD, I realized may have this. I also have numerous other diseases Lupus, Sojgrens, Hypothyroid, High […]

Today is the Thirteenth Anniversary of my kidney cancer surgery. These thirteen years have been bonus years for me. For my cancer stage, the 5-year survival rate was 81% and I’ve made it more than twice that long – so far.

Kathy was diagnosed with a pituitary tumor in 1991. At the time the only symptom she was aware of was a severe headache. She had a transsphenoidal resection followed by radiation therapy for 23 days. They said they could not remove all of the tumor.

Sadly, we lost another Cushing’s patient on Friday, May 9, 2014. Melinda was a member of the Cushing’s Help message boards since Jun 24, 2007. She was only 25 and left behind a young son and many loving family members.

He died of a presumed heart attack. September 19, 2015 he said "'I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I'll have to consult my doc and see if this may also be an issue."

'My name is Caroline and I dont post often but have met a few of you guys and read the board regularly, it has definitely been a godsend to cushies everywhere. The reason I am writing tonight is I have just received devastating information about a dear friend of mine, and a woman some of you may have met during testing. Her name is Kathryn Miller and sh […]

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Since the last topic was about Adrenal Insufficiency, it seemed that a great next topic would be about Medic Alert Bracelets.

Many doctors insist that everyone who has had pituitary or adrenal surgery have a bracelet – and some will even tell patients what they should say on them.

While I was still a patient at the NIH (National Institutes of Health) after my pituitary surgery, I was given my first bracelet along with my kit in care of adrenal crisis. I had to learn to give myself a shot before I could go home.

Now, my endo checks mine at every visit to be sure I’m wearing my bracelet and reads it to be sure it’s still legible and checks to see what the text says.

He feels that the bracelets – and he insists that they LOOK like medic alert bracelets, not disguised as jewelry – are life savers.

I’m not so sure – I read stories on the message boards that people have gone into AI (adrenal insufficiency and no one has ever looked at their bracelet. That was certainly the case for young Sam. Her mom had instructions everywhere, none were heeded and the situation rapidly turned disastrous.

…We have dealt with Addison’s for 7 years; but I have handled everything. Apparently the vials of solu-cortef with step-by-step instructions hanging on the bulletin board in the kitchen, medicine cabinet and in every vehicle somehow missed his attention… (read the whole story at survive the journey: Stars Go Blue)

A lot of us are not taught about adrenal insufficiency during our education….nor do many of us (if any at all) have a protocol to administer Injectable for AI unless we are able to contact the ER doctor for permission. So…if any of you should have an AI crisis please gently nudge your paramedic to contact the receiving physician for permission to administer the medication. I know this sounds like a lot of responsibility on the part of the patient…but you have to realize that we’re taught to recognize the most common life threats and endocrine disorders (other than diabetes) most usually do not present with life threats (we all know that as cushing’s is more recognized that this will change)…and our protocols cover the most common life threats….so while we may recognize that you are hypotensive and need fluids (IV) and are sweaty, nauseated, decreased level of responsiveness etc…we are not equipped to deal with the actual cause unless you help educate us….

Also…please don’t get angry with us….if we are having problems understanding…just gently insist that a call be made to your doctor or the receiving ED (usually not feasible for us to call your doctor since they do not come to the phone for just anybody but if you have access to them, as many cushies do, it would be great to talk to them)…

Paramedicine is evolving….someday soon, hopefully, our education will include more diagnostic skills…untill just in the past 5 years or so we were NEVER to make a diagnosis at all…just treat the symptoms!!!! So there is hope out there for futher understanding of such a critical problem for those without adrenal (or asleep adrenals) glands….

15 Responses

I have had a medic alert bracelet since 1987. My nurses at NIH gave me a plain one with no info on it which just said to "read the card". I would think that by the time the medics rifled through my purse to find "the card", I could be dead. So I got the official brand-name bracelet, partly because there was a toll-free number doctors could call if there was more info than fit on the bracelet.

My endo checks on it at every visit. He wants to be sure that it looks like what it is. He believes that if it looks too much like jewelry, medics will miss it.

I have never had a crisis – thank goodness – but I had a surprise illness/hospitalization and the staff checked it then. They called my endo and I got stress dose steroids during my hospitalization and during the resulting surgery.

I have a medic alert bracelet and when I had to go to the ER they were totally in the dark about AI and my mother had to argue for a long time as I fought to stay conscious. Also, they wanted to give me the wrong kind of steroid and we had to argue with them to get CORTEF only. It was a nightmare. My medic bracelet says: Meds Taken. Adrenal Insufficiency. Need stress dose steriods.
But no one read it. No one knew that it should be CORTEF.

WASHINGTON – Emergency health alerts for the Facebook generation? The nation's ambulance crews are pushing a virtual medical ID system to rapidly learn a patient's health history during a crisis — and which can immediately text-message loved ones that the person is headed for a hospital.

The Web-based registry, invisibleBracelet.org, started in Oklahoma and got a boost this fall when the state's government made the program an optional health benefit for its own employees.

Now the Invisible Bracelet attempts to go nationwide as the American Ambulance Association next month begins training its medics, who in turn will urge people in their communities to sign up.

For $5 a year, basic health information and up to 10 emergency contacts are stored under a computer-assigned PIN number that's kept on a wallet card with your driver's license, a key fob or a sticker on an insurance card.

It's a complement to the medical alert jewelry that people with diabetes, asthma and a host of other conditions have used for decades to signal their needs in an emergency.

And it comes as the American College of Emergency Physicians is trying to determine just what information is the most critical for medics and ER doctors to find when you're too ill or injured to answer questions, so that competing emergency-alert technologies don't miss any of the essentials.

"Too many times, we don't have the information to help us treat the patients correctly," says James Finger, president of the American Ambulance Association, the largest network of emergency medical service providers.

Not everyone who should wear a medical alert bracelet does, costing EMS workers precious minutes determining, for example, if someone's incoherent because he's having a stroke or because he's a diabetic with dangerously low blood sugar.

Even someone too healthy for those bracelets may have some condition that could help emergency workers make a faster diagnosis, avoid a medication reaction — or track down their next-of-kin faster.

The question is how to make sensitive medical data easily accessible to emergency workers without violating federal health-privacy laws. Options range from simple bracelets to pricier key-chain flash drives, implanted microchips — and call-centers that relay stored health records and notify relatives when an alarm or medic's phone call activates the system.

Rapid family notification is crucial, says Stephen Williamson, president of Oklahoma's Emergency Medical Services Authority — and one reason his EMS provider recently trained to use the new Invisible Bracelet.

A medical alarm necklace Williamson bought for his mother promptly called an ambulance when she fell, but didn't alert him as promised until 11 hours after he learned of her hospitalization on his own.

And when his wife suffered a brain aneurysm a year ago, Williamson called 911 and got her in the ambulance — only to freeze, unable to remember how to contact their daughters.

"I'm in the business of emergencies. … But I just stared at my phone. I couldn't figure out for, honest to God, five minutes it seemed like, 'What do I do?'" Williamson recalls. "I'd much rather have known that's being handled and left for the hospital."

Enter the Invisible Bracelet. Only authorized medics can access a Web site that reads the PIN and opens the health info they use to treat. Then, with a push of a button, the medic chooses an area hospital for transport. Simultaneously, the up to 10 people listed to be notified by text or e-mail get that message.

EMS providers couldn't show data yet on how well it works. But nearly 100,000 people have enrolled since the service opened in Oklahoma in April, says Noah Roberts of the Tulsa-based Docvia health software company, and the University of Oklahoma is preparing to use it for a campus registry.

The ultimate goal is an electronic medical record for everyone, available no matter where they are, says Dr. Andrew I. Bern, an ACEP board member and emergency physician in south Florida.

That's years away. Until then, ACEP is preparing recommendations for the most important information to overcome what Bern calls "the limited real estate" on emergency bracelets and wallet cards, and the problem of outdated information when people forget to update their records.

No one's immune: 120 million people needed emergency care last year, Bern notes. So in choosing whichever of today's emergency-information systems most fits your lifestyle, he stresses to keep it up to date.

"You have to be a partner in this whole process, gathering the information," he says. "If it's not current, it's not that useful."

Thank you Sandy, yes I do make them or use your fav bracelet and turn it into a medic alert bracelet. My e-mail is carlsonssix@hotmail.com with 2 ss, I love you sandy, you are a great friend. I am also recommending that ALL people wearing a medic alert bracelet wear a medic alert charm that dangles from the lobster claw so the medic team will not miss it, since it might be looked at as just a bracelet. My beaded bracelets are very inexpensive $10-$30, the $10 would be considered costume jewery and the $30 would be real pearls and crystals and sterling silver or what ever you want, ect.

new site with pictures http://sherrysoneofakind.shutterfly.com/ this site is under construction but wll give you the general idea of what I do. I am also spreading the word about Cushing's. Happy shopping:)

I sell to my cushie/addison friends much cheaper because I want to save lives not make a ton of money from you. If I saved one life with one of my bracelets it would be so worth it. The cost is just for the bracelet the tag would be seperate but I know of several great websites that are cheap. Or I have generic tags that say "SEE WALLET CARD" and it comes with a card for $12. I hope to have a website up and running very soon, i am trying to do it myself and am not so good at it, but am learning. I will post it when it is up and running.

Hugs to all of you and thank you MaryO for once again doing an amazing job at this site.

I recently had to have the squad come get me, for something other than AI. However, I was very happy to see that the paramedics DID look at my medic alert bracelet. I have one that looks like a bracelet on the one side, but I often wear that side down, and the metal tag on top. I have writing on each side. I also have 5 lines on each side. Here is the info I include:

My name
No Adrenals
Adrenal Crisis (yes, it's redundant, but it should get their attention if they miss it!)
My Endo's name
My Endo's phone number

On the back:
100 mg Solu-Cortef
In 50CC of NS in IV
Over 15-30 min.
My PCP's name
My PCP's number

When speaking of medical alert bracelets, I suggest the use of Just5 cell phone especially for seniors. It has big buttons and bright display, which make it easy-to-use for the elderly. The phone has also a one-touch SOS button that can call for help anytime and anywhere. I read about this phone before at http://www.just5.com.

Thanks for sharing
The purpose of a medical alert id is to “talk” for you when you may not be able to talk during an emergency. It will act as your personal safety measure by telling medical attendants or doctors of specific medical ailments or allergies.